posted
with a PICC line?? Just had it placed on Thurs. and having so much discomfort. Legs were weak yesterday and I lost sensation from waist down - skin is numb and left leg seemed to go out on me. I can not feel a light pinch or scratching. Having all sorts of problems today with weakness/numbness.
Could this be related to the PICC and my chest pain...or would this be a herx?? I only had one infusion last Thurs. Merrem was the antibiotic. didn't think I could herx that quickly, so I am thinking it is from the PICC??
I am getting worried!
Posts: 618 | From NC | Registered: Oct 2009
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Please call your doctor.
It could be a herx but could also be something else.
Please let us know how you are doing.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
Thank joalo! They are pulling the picc tomorrow and replacing it. They are saying the other symptoms are a herx. I'm really hoping it's not related to my heart or a weird blood clot! I tend to think the worst!
Praying that it goes more smoothly tomorrow!!!
Posts: 618 | From NC | Registered: Oct 2009
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posted
Thanks Lymetoo! I am still SOO uncomfortable - like a pencil is stuck in my chest and my chest is caving in type uncomfortable. In addition, from my chest to my arm just a very sore/tender feeling like I've just had surgery or something. The type of discomfort has been changing. It's been 6 days since PICC has been placed, so this pain is not going away.
Not sure if my body is trying really hard to reject it and mounting an inflammatory response to the foreign object or if it's just placed wrong. I'm wondering if I will need a pediatric line. We will see tomorrow when I get a new one put in!
Thank you for the prayers!!!
Posts: 618 | From NC | Registered: Oct 2009
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posted
well, I have been telling my LLMD since Friday, the day after it was put in. I also saw my PCP last night - they know I'm in pain, can't sleep, etc. At first, they were saying give it a few days to see if it subsides. now they are saying it needs to come out.
I am just worried b/c my left leg is in a lot of pain and I have widespread numbness. Could this cause a blood clot?? I tend to think the worst and start to panic, so I'm trying to stay calm so I don't cause my chest anymore pain.
Posts: 618 | From NC | Registered: Oct 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
jwall, do whatever you can to try to relax and distract yourself. Can you call a friend to come over for awhile? Maybe watch a funny movie or your favorite TV show? Anything to get your mind off the pain and "what if's". It sounds like you are really distressed.
Have you tried warm compresses, ibuprofen (800mg), and sleeping with a pillow? These things helped me. Still I had arm/shoulder/chest pain for quite awhile afterwards. It made me cry when I tried to change clothes, reach above my head, or lift anything. It did get better with time.
If it gets worse or you cannot tolerate it any longer remember you can go to the ER and have it pulled tonight. They would be glad to remove your problematic PICC. Then you could sleep easy knowing it's gone.
The leg pain is probably not related to the PICC line. You can always develop a blood clot from immobility (office workers are even at risk for this). Your PCP probably evaluated you for this even if he didn't mention it.
Your leg pain might also be a herx with the numbness. I really wish that your LLMD's office would be more supportive for you now that you need it.
Take care and good luck with the replacement tomorrow.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thanks Sammy. I am trying to distract myself until tomorrow morning. I am moving around and stretching my leg. Advil relieves the pain to an extent. I just keep hearing from people that it should not be causing me chest pain at all...that most people get a picc line and are out running around, doing normal things.
I had 2 more doses of merrem yesterday and generally I feel crummy today with new symptoms going on. My left leg is a new one and the widespread numbness, so this is setting me up for panic mode (I never had panic prior to lyme)...only because of the picc in my chest. If I did not have this in my chest w/pain, I would realize this was just a herx.
My LLMD's office actually has been really supportive....they called me 4 x's yesterday and this AM. Initially, they were just saying give it some time to see if it gets better. LLMD said it was normal to experience discomfort after the procedure, but now (6 days later) they are saying not normal. They are in DC and I'm in NC, so it's hard for them to do much. They did set up the appt. for me in the hospital tomorrow. They also said leg numbness, etc. is a herx.
I was just hoping this would all go smoothly. Thanks for the helpful tips. I will apply warm compress now and try to relax. I'll keep you posted.
Posts: 618 | From NC | Registered: Oct 2009
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You'll make it! Sounds like they are on top of things. Just gotta make it thru tonight! Take a warm bath!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
jwall, any news? Have been beaming good vibes at you all day!
Hoping that you have a new, more comfortable picc today.
Mostly hoping that all is well.
Update us when you can!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Thanks everyone! It didn't go as planned unfortunately. After 8 LONG hours at the hospital, the picc was finally pulled b/c of a blood clot. they were worried it had broken off from my collar bone area and traveled into my lungs, so it made for a VERY long day! They will not replace the picc for now...I have to wait until Monday to see if blood clot is gone..and then wait to see what vascular MD says.
PICC nurse said piccs should always go in the right arm...mine was in the left. They really aren't sure what caused all the pain, but assume it was the blood clot. Picc nurse said it was placed correctly...it just has longer to travel from the left arm and usually the right arm works better.
I will keep you posted. I really need to start treatment, but maybe I'll do oral abx for now. Was in touch with LLMD all day, but they want me back on track with IV...very sick with lots of neuro. symptoms.
I'm exhausted tonight and drained, esp. since I got a STERN talking to from the MD who dealt with me today about my LLMD and his "controversial" treatment of lyme, how his license was taken away...on and on. I am in NC...well, you can conclude who my LLMD is. I started crying...not very strong right now as I'm so sick. Once he saw me crying and I started sticking up for my LLMD, he spoke more gently and said that my LLMD had actually helped a number of his patients...BUT that he was controversial and that I should be aware of that. Already know this, thanks though doc!
Hard day....thank you so much for the thoughts and for the help along the way!!!
Posts: 618 | From NC | Registered: Oct 2009
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